I look forward to the ULF's annual conference every year. A great place to meet with leukodystrophy knowledgeable doctors and to meet up with affected families from around the world.
Review from Guidestar
This is a membership nonprofit which requires annual dues. This organization was sent a certified letter requesting a copy of the by-laws in order to discover how they add people to the Board of Directors. The certified letter was sent by a dues-paying member. The dues-paying member was completely ignored. The issue has to do with two organizations who both seemingly support CADASIL (a genetic disease) whereby a Board member of one is now on ULF's Board also, and who took a significant amount of money raised by members of the other organization for that organization and gave it to ULF. This gives the appearance of the commingling of funds. In addition, the other organization got address information from the ULF and gave it to the other organization when the other organization had been noticed in writing of the address to be used. Both these instances lead to the appearance of legal impropriety and possibly the misuse of public donations.
Ignoring a dues-paying member who sent a certified letter request for information relative to the organization does not appear seemly or appropriate at all.
Review from Guidestar
UlfUnited 01/09/2024
Taking in consideration that this is an extremely old review, I would like to clarify about the ULF. Our organization does not collect annual dues, nor does our organization have a membership. We proudly serve the leukodystrophy community as a whole. Which includes over 50+ types of leukodystrophies. Our vision, at the ULF, is to meet the needs of patients and families, whether newly diagnosed or living with a leukodystrophy. Through unified collaboration with advocacy groups, medical and research professionals, and pharma/biotech companies, we provide support, networking, and education to help navigate the journey of the disease.